Unlike father unlike son

My Mum used to say that my Dad (a former cross-country runner) would often wake her up in the middle of the night by running in his sleep. His legs and feet going like the clappers. When woken and asked to explain he would mumble something about running across the fields and ditches of his native East Anglia.

I used to think that was quite sweet, and in the same way as my pet cat flying off to chase mice in the sky, I often hope that the afterlife for my Dad might include a few lengthy runs particularly as he isn't as mobile as he used to be.

I was woken up last night. Even though I have been taking my amitriptyline pills for neuropathic pain, my legs and feet decided to ignore them and they kept me awake for a long time in the early hours.

It's hard to describe how neuropathic pain feels, and it's different for different people. Sometimes they feel as if my legs are made of sponge and they are gradually being wrung out. Sometimes it feels as though they want to curl and shrivel up like a burning match. Sometimes it feels as though a large concrete slab is being placed on them imperceptably slowly by just a micron or two every minute or so.

Last night it felt like they just wanted to detach themselves and run away, running to catch up with my Dad on his ploughed field.

I'm in pain...

It's not pain as you would conventionally know it and it's really difficult to describe the sensation. My feet and lower legs feel like they want to shrivel up and shrink into themselves with occasional stabs of more conventional pain from my toes. I used to describe it as a crawling sensation, but that doesn't do it justice, it is more like my calves and feet are sponges that
someone is gradually wringing out.

I have had this a while, probably a couple of years and the pain is there all the time. It normally causes what I would term chronic discomfort. In the last seven days, however, it has been flaring up regularly into toe-curling proportions. It will gradually get worse for a few hours later in the day. It can start at lunchtime or in the evening and progresses to become really debilitating. The only thing that provides relief is if I get up and walk around and I often imagine that my legs want to break away and run off by themselves. I guess it also gets worse the hotter or more fatigued I get.

Conventional painkillers - ibuprofen, paracetamol etc - are no good. I'm not keen on taking any new drugs after the experience I had with Gabapentin, so I'm going to see my GP in the morning if there is anything I can do or take for any relief.

This was written while screwing my face into contortions. Apologies if it's rubbish.

Relapse??

I'm a bit worried I might be starting to relapse again. My optic neuritis seems to have returned in my left eye - I have been having speckled lights in my vision and pain when looking round. So far, only one large white phosphene. The other day my head went tingly as I drove home from work and I've had the hot cold feet and quite a severe flare up of leg pain (the ants / woodlice trying to get out).

If it's still a concern on Monday, I will phone my nurse and ask her advice, though the optic neuritis doesn't (so far) seem as bad as 2004.

So long Gabapentin!

With the backing of my GP, I have ditched Gabapentin.

It has been making me feel crap for a while, now. The main side effects being fatigue and hallucinations. I was starting to fall asleep by 7pm every day. As an experiment, I tried a couple of days over Christmas without taking the pills and I instantly felt better. I took my last pill three days ago and my wife has since remarked that I look a lot better and I am chirpier in the mornings.

It seems to me that while G didn't rid me of symptoms completely, it must have had some dampening effect. My hands, feet and leg feel three times as bad as they did a week ago, and my calves and feet were excruciatingly crawly last night but - you know what? I'd rather have that than the side-effects.

Now I can be more in tune with how my body is feeling, particularly as a lot of G's side-effects mirror (and mask) general MS symptoms anyway.

Weird new symptom alert - update

The on-and-off hot foot sensation from the other day has now been replaced with an ice cold foot. For most of my drive in to work this morning my right foot felt as if I had been kicking snow around with inadequate footwear on.

I worry about my right foot and leg. I often think that in the unlikely event that I "lose" a leg - it's going to be the right one. Bang go my childhood dreams of playing on the wing for Man City.

I know I have at least three large patches of myelin damage in my spinal cord - the one that causes L'hermitte's must have been subdued somewhat but seeing as I'm having bad pins and needles in both hands at the moment and a seriously fuzzy leg I'm wondering if the increased dose of Rebif (beta interferon) is having this effect. Another increase in dose next week - oh joy!

Weird new symptom alert!

I was lying in bed on Saturday morning, enjoying a rare lie-in (7.30!) when my right foot suddenly became hot - then it switched itself off again to it's normal temperature. It then switched itself on and off three or four more times instantly turning hot and then normal again until I decided to get up and fix breakfast.

It hasn't done it since, but this is a new one for me and I expect it will probably happen again at some point. The whole thing was very peculiar, but because I know the reasons why this sort of thing happens it doesn't freak me out.

When I first developed MS symptoms, I expected something a lot worse and I noticed every twitch of a muscle, every tingle, every hyper-sensitive patch on my body, but when I was given the label of MS that I could slap on everything I was experiencing, I was more able to cope.